Prejudice and Discrimination, the Uncured Ills of Leprosy

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Nippon Foundation President Yohei Sasakawa and Socorro Gross, Pan American Health Organisation representative in Brazil, hold a press conference in Brasilia at the end of a 10-day visit to this country by the Japanese activist who is also World Health Organisation Goodwill Ambassador for Leprosy Elimination. Credit: Mario Osava/IPS

Nippon Foundation President Yohei Sasakawa and Socorro Gross, Pan American Health Organisation representative in Brazil, hold a press conference in Brasilia at the end of a 10-day visit to this country by the Japanese activist who is also World Health Organisation Goodwill Ambassador for Leprosy Elimination. Credit: Mario Osava/IPS

BRASILIA, Jul 11 2019 (IPS) – “The ambulance team refused to take my sick friend to the hospital because he had had Hanseniasis years before,” said Yohei Sasakawa, president of the Nippon Foundation, at one of the meetings held during his Jul. 1-10 visit to Brazil.

His friend was completely cured and had no visible effects of the disease, but in a small town everyone knows everything about their neighbours, he said.

This didn’t happen in a poor country, but in the U.S. state of Texas, only about 20 years ago, Sasakawa pointed out to underline the damage caused by the discrimination suffered by people affected by Hansen’s Disease, better known as leprosy, as well as those who have already been cured, and their families.

“The disease is curable, its social damage is not,” he said during a meeting with lawmaker Helder Salomão, chair of the Human Rights Commission in Brazil’s lower house of Congress, to ask for support in the fight against Hanseniasis, the official medical name for the disease in Brazil, where the use of the term leprosy has been banned because of the stereotypes and stigma surrounding it.

The highlight of the mission of Sasakawa, who is also a World Health Organisation (WHO) Goodwill Ambassador for Leprosy Elimination, was a meeting on Monday Jul. 8 with President Jair Bolsonaro, who posted a message on Facebook during the meeting, which had nearly 700,000 hits as of Thursday Jul. 11.

In the 13-and-a-half minute video, Bolsonaro, Sasakawa, Health Minister Luiz Mandetta and Women, Family and Human Rights Minister Damares Alves issued a call to the authorities, organisations and society as a whole to work together to eradicate the disease caused by the Mycobacterium Leprae bacillus.

A preliminary agreement emerged from the dialogues held by the Japanese activist with members of the different branches of power in Brasilia, to hold a national meeting in 2020 to step up the fight against Hanseniasis and the discrimination and stigma faced by those affected by it and their families.

The idea is a conference with a political dimension, with the participation of national authorities, state governors and mayors, as well as a technical dimension, said Carmelita Ribeiro Coriolano, coordinator of the Health Ministry’s Hanseniasis Programme. The Tokyo-based Nippon Foundation will sponsor the event.

Brazil has the second highest incidence of Hansen’s Disease in the world, with 27,875 new cases in 2017, accounting for 12.75 percent of the world total, according to WHO. Only India has more new cases.

The government established a National Strategy to Combat Hanseniasis, for the period 2019-2022, in line with the global strategy outlined by the WHO in 2016.

Brazilian Minister of Women, Family and Human Rights Damares Alves receives a gift from Yohei Sasakawa, president of the Nippon Foundation, at the beginning of a meeting in Brasilia, in which the minister promised to strengthen assistance to those affected by Hansen's Disease, including the payment of compensation to patients who were isolated in leprosariums or leper colonies in the past. Credit: Mario Osava/IPS

Brazilian Minister of Women, Family and Human Rights Damares Alves (L) receives a gift from Yohei Sasakawa, president of the Nippon Foundation, at the beginning of a meeting in Brasilia, in which the minister promised to strengthen assistance to those affected by Hansen’s Disease, including the payment of compensation to patients who were isolated in leprosariums or leper colonies in the past. Credit: Mario Osava/IPS

Extensive training of the different actors involved in the treatment of the disease and plans at the state and municipal levels, tailored to local conditions, guide the efforts against Hansen’s Disease, focusing particularly on reducing cases that cause serious physical damage to children and on eliminating stigma and discrimination.

Before his visit to Brasilia, Sasakawa, who has already come to Brazil more than 10 times as part of his mission against Hansen’s Disease, toured the states of Pará and Maranhão to discuss with regional and municipal authorities the obstacles and the advances made, in two of the regions with the highest prevalence rate.

“In Brazil there is no lack of courses and training; the health professionals are sensitive and give special attention to Hanseniasis,” said Faustino Pinto, national coordinator of the Movement for the Reintegration of People Affected by Hanseniasis (MORHAN), who accompanied the Nippon Foundation delegation in Brasilia.

“Promoting early diagnosis, to avoid serious physical damage, and providing better information to the public and physical rehabilitation to ensure a better working life for patients” are the most necessary measures, he told IPS.

Pinto’s case illustrates the shortcomings in the health services. He was not diagnosed as being affected with Hansen’s Disease until the age of 18, nine years after he felt the first symptoms. It took five years of treatment to cure him, and he has serious damage to his hands and joints.

His personal plight and the defence of the rights of the ill, former patients and their families were outlined in his Jun. 27 presentation in Geneva, during a special meeting on the disease, parallel to the 41st session of the Human Rights Council, the highest organ of the Office of the United Nations High Commissioner for Human Rights.

Pinto is an eloquent advocate of the use of Hanseniasis or Hansen’s Disease, rather than leprosy, a term historically burdened with religious prejudice and stigma, which aggravates the suffering of patients and their families, but continues to be used by WHO, for example.

Yohei Sasakawa (2nd-L), president of the Nippon Foundation, accompanied by two members of his delegation, took part in a meeting with Congressman Helder Salomão (C), chair of the Human Rights Commission of the Brazilian Chamber of Deputies, who pledged to support initiatives to eliminate leprosy in his country. Faustino Pinto (2nd-R), national coordinator of the Movement for the Reintegration of Persons Affected by Hanseniasis (MORHAN), also participated. Credit: Mario Osava/IPS

Yohei Sasakawa (2nd-L), president of the Nippon Foundation, accompanied by two members of his delegation, took part in a meeting with Congressman Helder Salomão (C), chair of the Human Rights Commission of the Brazilian Chamber of Deputies, who pledged to support initiatives to eliminate leprosy in his country. Faustino Pinto (2nd-R), national coordinator of the Movement for the Reintegration of Persons Affected by Hanseniasis (MORHAN), also participated. Credit: Mario Osava/IPS

Discrimination against people with the disease dates back to biblical times, when it was seen as a punishment from God, said Sasakawa during his meeting with Minister Damares Alves, a Baptist preacher who describes herself as “extremely Christian”.

In India there are 114 laws that discriminate against current or former Hansen’s Disease patients, banning them from public transport or public places, among other “absurdities”, he said.

In India, they argue that these are laws that are no longer applied, which justifies even less that they remain formally in force, he maintained during his meetings in Brasilia to which IPS had access.

Prejudice and misinformation not only subject those affected by the disease to exclusion and unnecessary suffering, but also make it difficult to eradicate the disease by keeping patients from seeking medical care, activists warn.

His over 40-year battle against Hansen’s Disease has led Sasakawa to the conclusion that it is crucial to fight against the stigma which is still rife in society.

He pressed the United Nations General Assembly to adopt in 2010 the Resolution for the Elimination of Discrimination against Persons Affected by Leprosy and their Families.

He said these attitudes and beliefs no longer make sense in the light of science, but persist nonetheless.

Treatment making isolation for patients unnecessary in order to avoid contagion has been available since the 1940s, but forced isolation in leprosariums and leper colonies officially continued in a number of countries for decades.

In Brazil, forced segregation officially lasted until 1976 and in practice until the following decade.

With multi-drug treatment or polychemotherapy, introduced in Brazil in 1982, the cure became faster and more effective.

Information is key to overcoming the problems surrounding this disease, according to Socorro Gross, the Pan American Health Organisation (PAHO) representative in Brazil who also held meetings with the Nippon Foundation delegation.

“Communication is essential, the media has a decisive role to play” to ward off atavistic fears and to clarify that there is a sure cure for Hansen’s Disease, that it is not very contagious and that it ceases to be so shortly after a patient begins to receive treatment, Gross, a Costa Rican doctor with more than 30 years of experience with PAHO in several Latin American countries, told IPS.

 

A Lifelong Battle Against the “Disease of Silence”

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Mario Osava interviews YOHEI SASAKAWA, president of the Nippon Foundation

Yohei Sasakawa, president of the Nippon Foundation, is interviewed by IPS in the Brazilian capital, where he concluded a tour of the country aimed at promoting the elimination of Hansen's Disease, better known as leprosy, and also the stigma that make it the "disease of silence.” Credit: Mario Osava/IPS

Yohei Sasakawa, president of the Nippon Foundation, is interviewed by IPS in the Brazilian capital, where he concluded a tour of the country aimed at promoting the elimination of Hansen’s Disease, better known as leprosy, and also the stigma that make it the “disease of silence.” Credit: Mario Osava/IPS

BRASILIA, Jul 10 2019 (IPS) – Yohei Sasakawa has dedicated half of his 80 years of life to combating the “disease of silence” and is still fighting the battle, as president of the Nippon Foundation and World Health Organisation (WHO) goodwill ambassador for elimination of leprosy, formally known as Hansen’s Disease.

His current emphasis is on combating the discrimination, prejudice and stigma that aggravate the suffering of people with leprosy, their families and even those who have already been cured. They also stand in the way of treatment, because people with the disease keep silent out of fear of hostility, he told IPS in an interview in the Brazilian capital.

“I travel around the world and speak out against the discrimination that marginalises those affected by the disease. But these are prejudices that have existed for 2,000 years; they cannot be overcome in two or three years. Many share my viewpoint and accompany me in the struggle. One day the discrimination will end. It is more difficult to cure the disease that plagues society than the illness itself. My effort is to hold a dialogue with presidents and ministers, people in positions of leadership, so that my message acquires political strength and can lead to a solution.”

Sasakawa visited Brazil Jul. 1 to 10, as part of his activism aimed at reducing the prevalence and social impacts of a disease stigmatised since biblical times. In Brasilia, he mobilised President Jair Bolsonaro, legislators and health and human rights officials to promote more intense efforts against the disease.

The idea of holding a national conference on Hansen’s Disease emerged from the meetings, with the political objective of disseminating knowledge and bolstering the disposition to eradicate prejudice, and the technical goal of improving strategies and efforts against the disease.

Brazil is second only to India with respect to the number of new infections diagnosed each year. The country implemented a National Strategy to Combat Hanseniasis from 2019 to 2022, with plans also at the level of municipalities and states, tailored to the specific local conditions.

The Tokyo-based Nippon Foundation is funding several projects and is preparing to support new initiatives in Brazil.

Brazil and Japan abolished the word leprosy from their medical terminology, due to the stigma surrounding it, and adopted the term Hanseniasis to refer to the disease caused by the Mycobacterium leprae bacillus. Sasakawa used this name during his interview with IPS, even though the WHO continues to employ the term leprosy.

IPS: Why did you choose as your mission the fight against Hansen’s Disease and the different kinds of harm it causes to patients and their families?

YOHEI SASAKAWA: It started with my father, the founder of the Nippon Foundation, who as a young man fell in love with a young woman who suddenly disappeared when she was taken far away and put in isolation. My father was appalled by the cruelty and, driven by a spirit of seeking justice, he started this movement. No one discussed the reason she was taken away, but I sincerely believe it was because she had Hanseniasis.

Later my father built hospitals in different places, including one in South Korea, where I accompanied him to the inauguration. On that occasion I noticed that my father touched the hands and legs of the patients, even though they had pus. He hugged them. That impressed me.

I was surprised for two reasons. It frightened me that my father so easily embraced people in those conditions. Besides, I wasn’t familiar with the disease yet. I saw people with a sick, unhealthy pallor. They were dead people who were still alive, the living dead, abandoned by their families.

I was filled with admiration for my father’s work and immediately decided that I should continue it.

IPS: What are the main difficulties in eradicating Hanseniasis?

YS: In general, when faced with a problem specialists and intellectuals come up with 10 reasons why it’s impossible to solve. I have the strong conviction that it is possible, and that’s why I address the problem in such a way that I can identify it and at the same time find a solution.

The people who find it difficult generally work in air-conditioned offices pushing around papers, studying the data. The most important thing is to have the firm conviction that the problem can be solved and then begin to take action.

The president of the Nippon Foundation, Yohei Sasakawa (C) is seen meeting with the president of Brazil, Jair Bolsonaro (L), in an IPS screen capture from the video that the president broadcast on Facebook to raise public awareness about the importance of eliminating Hansen's Disease, better known as leprosy, and eradicating the prejudice faced by patients and their families. Credit: IPS

The president of the Nippon Foundation, Yohei Sasakawa (C) is seen meeting with the president of Brazil, Jair Bolsonaro (L), in an IPS screen capture from the video that the president broadcast on Facebook to raise public awareness about the importance of eliminating Hansen’s Disease, better known as leprosy, and eradicating the prejudice faced by patients and their families. Credit: IPS

Since the 1980s more than 16 million people have been cured of Hansen’s Disease. Today, 200,000 patients a year are cured around the world.

IPS: What role do prejudice, stigma and discrimination play in the fight against this disease?

YS: That is a good question. After working for many years with the WHO, focusing mainly on curing the disease, I realised that many people who had already been cured could neither find work nor get married; they were still suffering the same conditions they faced when they were sick.

I concluded that Hanseniasis was like a two-wheeled motorcycle – the front one is the disease that can be cured and the back one is the prejudice, discrimination and stigma that surround it. If you don’t cure both wheels, no healing is possible.

In 2003, I submitted to the United Nations Commission on Human Rights a proposal to eliminate discrimination against Hanseniasis. After seven years of paperwork and procedures, the 193-member General Assembly unanimously approved a resolution to eradicate this problem that affects the carrier of the disease as well as those who have been cured, and their families.

But this does not mean that the problem has been solved, because prejudice and discrimination are the disease plaguing society.

People believe that Hanseniasis is a punishment from God, a curse, a hereditary evil. It’s hard to eradicate this judgment embedded in people’s minds. Even today there are many patients who have recovered and are totally healed, who cannot find a job or get married. In spite of the new laws, their conditions do not improve, because of the prejudice in people’s hearts.

In Japan, several generations of the family of someone who had the disease were unable to marry. This is no longer the case today.

That’s why I travel the world and speak out against the discrimination that marginalises those affected by the disease. But these are prejudices that have existed for 2,000 years; they cannot be overcome in two or three years.

Many share my viewpoint and accompany me in the struggle. One day the discrimination will end. It is more difficult to cure the disease that plagues society than the illness itself.

My effort is to hold a dialogue with presidents and ministers, people in positions of leadership, so that my message acquires political strength and can lead to a solution.

IPS: How did Japan manage to eradicate Hansen’s Disease?

YS: One way was the collective action of people who had the disease. Long-term media campaigns were conducted to spread knowledge about the disease. Movies, books and plays were also produced.

In Japan, Hanseniasis ceased to be the ‘disease of silence’. The nation apologised for the discrimination and compensated those affected. But in other countries, people affected by the disease have not yet come together to fight. Brazil, however, does have a very active movement.

IPS: As an example of what can be done, you cite Brazil’s Movement for the Reintegration of People Affected by Hanseniasis, MORHAN. Are there similar initiatives in other countries?

YS: Morhan really stands out as a model. Organisations have been formed by patients in India and Ethiopia, but they still have limited political influence. The Nippon Foundation encourages such movements.

IPS: You’ve visited Brazil more than 10 times. Have you seen any progress on this tour of the states of Pará and Maranhão, in the north, and in Brasilia?

YS: On that trip we couldn’t visit patients’ homes and talk to them, but we did see that the national, regional and local governments are motivated. We will be able to expand our activities here. In any country, if the highest-level leaders, such as presidents and prime ministers, take the initiative, solutions can be accelerated.

We agreed to organise a national meeting, promoted by the Health Ministry and sponsored by the Nippon Foundation, if possible with the participation of President Jair Bolsonaro, to bolster action against Hanseniasis.

We believe that this would generate a strong current to reduce the prevalence of Hanseniasis to zero and also to eliminate discrimination and prejudice. If this happens, my visit could be considered very successful.

IPS: What would you emphasise about the results of your visit?

YS: The message that President Bolsonaro spread directly to the population through Facebook during our meeting, with his view addressed to all politicians, to his team and and to all government officials on the need to eliminate the disease. I feel as if I have obtained the support of a million people who will work with us.

 

People Affected by Leprosy in Latin America Unite for Their Rights and Their Voice

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Family photo of part of the 111 participants in the First Latin American and Caribbean Assembly of Organisations of People Affected by Hansen's Disease, on the steps of the Morisco Palace, the headquarters of the Oswaldo Cruz Foundation, which hosted the three-day meeting in Rio de Janeiro, Brazil. Credit: Mario Osava/IPS

Family photo of part of the 111 participants in the First Latin American and Caribbean Assembly of Organisations of People Affected by Hansen’s Disease, on the steps of the Morisco Palace, the headquarters of the Oswaldo Cruz Foundation, which hosted the three-day meeting in Rio de Janeiro, Brazil. Credit: Mario Osava/IPS

RIO DE JANEIRO, Mar 14 2019 (IPS) – With the decision to found a regional coalition to promote rights and greater participation in national and international forums and decisions, the First Latin American and Caribbean Assembly of Organisations of People Affected by Hansen’s disease, popularly known – and stigmatised – as leprosy, came to an end.

The final session of the meeting, on Mar. 14, approved 40 of the 58 proposals presented by the 111 participants in three days of debates at the headquarters of the Oswaldo Cruz Foundation, a renowned scientific, medical and epidemiological research centre in Rio de Janeiro, Brazil.

José Picanço, 46, separated from his family and taken as a newborn to an orphanage because his parents were diagnosed with the disease in 1972, is one of those affected whose right to reparations remains unfulfilled. His three siblings are in the same situation.

When the family was reunited eight years later, the father turned his back on the children. The mother took them in, but died shortly afterwards. “I only lived with her, a saint, for five months,” Picanço recalled, barely managing to hold in his tears while giving testimony at the meeting.

“Humiliated as the children of lepers, suffering bullying and sexual harassment, many of the other children who were with me at the orphanage fell into drug abuse and alcoholism. It was a holocaust,” he said. “I hit my brother on the head, not knowing he was my own brother.”

“Of the 15,000 to 20,000 children separated from their families, more than 80 percent suffer from depression,” said Picanço in an interview with IPS, detailing some of the damage caused by the old rule of segregating the people then called “lepers”.

Mandatory isolation was widespread around the world, during different historical periods, and continues in some countries, even though it is known that the disease is curable and that patients cease to be contagious shortly after starting treatment.

Officially, Brazil abolished this practice in 1976, although it actually lasted 10 more years. Its direct victims were compensated starting in 2007, but their children were not. The activists gathered in Rio de Janeiro called for working for policies of reparations for children separated from their families.

Their complaints and proposals will be taken to the World Congress of associations of people affected by leprosy in Manila in September, which will also receive contributions from Africa and Asia, approved at recent similar regional assemblies.

“The goal is to form a large network of activists, to strengthen the movement” for the eradication of the disease and for care and reparations for those affected, said Kiyomi Takahashi of the independent Nippon Foundation, which is driving this international process of debate and cooperation.

The meeting in Rio de Janeiro fostered “a high-level dialogue, the result of Morhan and Felehansen’s long history of activities,” the Japanese expert told IPS, referring to the Movement for the Reintegration of People Affected by Hanseniasis (Morhan) in Brazil, and the National Federation of Entities Affected by Leprosy or Hansen’s Disease (Felehansen) in Colombia, the two organisers of the regional meeting.

Brazilian activists José Picanço (front) and Evelyne Leandro testified about how Hansen's disease affected them during a Latin American and Caribbean meeting in Rio de Janeiro. Picanço was separated from his parents when they were diagnosed with leprosy when he was born in 1972 and was only reunited with them eight years later, shortly before his mother died. Leandro wrote a book about the difficulties of being diagnosed with the disease in Germany, where she lives. Credit: Mario Osava/IPS

Brazilian activists José Picanço (front) and Evelyne Leandro testified about how Hansen’s disease affected them during a Latin American and Caribbean meeting in Rio de Janeiro. Picanço was separated from his parents when they were diagnosed with leprosy when he was born in 1972 and was only reunited with them eight years later, shortly before his mother died. Leandro wrote a book about the difficulties of being diagnosed with the disease in Germany, where she lives. Credit: Mario Osava/IPS

“Morhan is my safe haven, to preach that separated children should be heard and have opportunities,” said Picanço, who explained that he joined the movement in 1992. Today he gives talks on the direct and indirect effects of the stigma still surrounding the disease, that is suffered by those affected and their families.

A blessing

The disease “was a blessing for me,” Isaias Dussan Weck, 50, the vice-president of the Colombian association Felehansen, told IPS without hesitation.

The diagnosis in 2006 destroyed him, he said. He lost the desire to work or to go out, he let his business of supplying cleaning products to companies go bankrupt, he even contemplated suicide. He ignored the stains on his body that did not prevent him from working and traveling, until they spread to his face, and he noticed that parts of his body were going numb.

He received treatment and was cured, left with only slight numbness in one arm and pains in his left leg.

But everything went badly for him until he was invited to meetings with other people affected by leprosy. “I began to understand, when I heard their testimonies and tears, why a young black girl with severe disabilities said that leprosy was a blessing to her,” Dussan said.

Activism for the benefit of those affected, against the stigma and the damage caused by the disease, in the association of the department of Huila, in southwestern Colombia, allowed him “to gain new meaning for life and to understand and practice love for my neighbour.”

“Helping and seeing a patient’s life improve is a wonderful emotion, and you help other people want to live,” he concluded. That new passion led him to Felehansen, where he took on leadership roles in the federation.

Irma Romero, 42, president of the Nuevo Amanecer Foundation in Barranquilla, on Colombia’s northern coast, had a similar experience. Her lengthy odyssey to a specialist’s diagnosis five years ago reveals the medical system’s shortcomings when it comes to detecting and treating the disease, also known as hanseniasis, which is still viewed by many as “a divine punishment.”

Romero stopped working in the textile industry due to disability and depression. “I couldn’t even walk,” she recalled. “I even denied God,” she told IPS.

Colombian activist Irma Romero, a native of the city of Barranquilla, sitting on the bus that transported the participants of the First Latin American and Caribbean Assembly of Organisations of People Affected by Hansen's Disease, held Mar. 12-14 in Rio de Janeiro, Brazil. Credit: Mario Osava/IPS

Colombian activist Irma Romero, a native of the city of Barranquilla, sitting on the bus that transported the participants of the First Latin American and Caribbean Assembly of Organisations of People Affected by Hansen’s Disease, held Mar. 12-14 in Rio de Janeiro, Brazil. Credit: Mario Osava/IPS

Treatment using medicinal herbs, self-medication, rejection by relatives, attempts to separate her from her two children and abandonment by her husband all formed part of her suffering, which did not end with her treatment and cure.

The only permanent physical effects are numbness in her hands and feet, and sciatic nerve pain. But the discrimination continued.

“My life changed when I joined the association of affected people” four years ago, she said. “There I found people who had things in common with me, and a newfound love of my neighbour that I did not feel before,” said the activist, who became president of the Foundation the following year and reconciled with God.

Her foundation currently has 60 members. In Barranquilla she estimates that there are “about 200 affected people, but many more are hidden.”

The foundation is one of the 10 associations that make up Felehansen, eight of which call the disease hanseniasis or Hansen’s disease, one of which uses the term leprosy, and another of which refers to disabled people and is made up of patients who received a very late diagnosis.

The World Health Organisation (WHO) defines leprosy – the term it uses – as an infectious and chronic disease “transmitted by air through droplets from the nose and mouth, during close and frequent contacts with untreated cases.” It also specifies that leprosy is “one of the least infectious diseases.”

WHO reports that in 2017 there were 211,009 new cases worldwide, according to official data from 159 countries. That amounts to 0.3 cases per 10,000 inhabitants, which means it classifies as having been “eliminated,” according to WHO criteria.

Change of name: another recommendation

Proposing hanseniasis as the official name for the disease is one of the proposals that came out of the Latin American meeting, headed by Brazil, which has already adopted it, even prohibiting the mention of leprosy in the health system since 1995.

They are different concepts, because leprosy and leper have very negative connotations of “dirt, plague, impurities and divine punishment,” strengthened by numerous mentions with that moral burden in the Bible, argued Faustino Pinto, one of Morhan’s national coordinators.

But the activists from Colombia are not convinced. “People only know leprosy, they don’t know it’s Hanseniasis. To explain the issue to the population, you have to mention leprosy,” argued Romero.

“It will be necessary to educate the new generations about the concept of Hansen,” the Norwegian doctor Gerhard Hansen who discovered the bacillus that causes the disease, because adults are not likely to forget the stigma, said Dussan. “It’s harder to unlearn than to learn,” he added.

Another proposal of the Latin American Assembly is to extend the current Committee for Assistance to Brazilian Immigrants Affected by Hanseniasis to all Latin Americans and people from the Caribbean, in addition to extending it to other regions.

The reference point in this is Evelyne Leandro, a 37-year-old Brazilian who has lived in Germany for nine years and had a lot of difficulties getting diagnosed with the disease in a country where it is very rare and where very few doctors are familiar with it.

She was helped by her mother’s suspicion, awakened in Brazil by an outreach campaign on the disease, and by the Institutes of Tropical Medicine in Germany.

Her case and those of other immigrants in Europe are recounted in her book “The Living Death: the struggle with a long forgotten disease”.

 

People Affected by Leprosy Still Face Stigma in Latin America

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Kiyomi Takahashi of the independent Nippon Foundation explains the international movement for the rights of the victims of leprosy during the opening session of the First Latin American and Caribbean Meeting of Organisations of People Affected by Hansen's Disease, held in the Brazilian city of Rio de Janeiro. The foundation is backing the process for the World Congress on Leprosy to be held in September. Credit: Mario Osava/IPS

Kiyomi Takahashi of the independent Nippon Foundation explains the international movement for the rights of the victims of leprosy during the opening session of the First Latin American and Caribbean Meeting of Organisations of People Affected by Hansen’s Disease, held in the Brazilian city of Rio de Janeiro. The foundation is backing the process for the World Congress on Leprosy to be held in September. Credit: Mario Osava/IPS

RÍO DE JANEIRO, Mar 12 2019 (IPS) – The First Latin American and Caribbean Meeting of Organisations of People Affected by Hansen’s Disease, more widely known as leprosy, seeks to exorcise stigma and discrimination. The meeting has brought together around a hundred activists in Brazil.

The rights and participation of these people in all aspects of the World Health Organisation‘s (WHO) Global Leprosy Strategy 2016-2020 are the themes of the meeting, taking place in Rio de Janeiro from Mar. 12-14.

The gathering will establish this region’s proposals, as did recent regional assemblies in Asia and Africa.

The goal is for all the experiences and proposals to converge towards the World Congress on Leprosy that will take place in the Philippines in September, Kiyomi Takahashi, of the independent Nippon Foundation, which is backing the entire process, stressed during the opening session.

Brazil is at the forefront of the debate because it is considered the only country that has failed to eliminate the disease and has the highest incidence worldwide, with 25,000 to 30,000 new cases each year, 95 percent of the total in the Americas, according to official data.

This is an unacceptable figure for “a curable disease that is treated free of charge in the public health system,” said Artur Custodio, coordinator of the Brazilian Movement for the Reintegration of People Affected by Hanseniasis (Morhan), which organised the Latin America meeting together with the Federation of Organisations of People Affected by Leprosy in Colombia.

In addition, Brazil stands out for abolishing the word leprosy, because it is historically laden with prejudice. Since 1995, Hanseniasis or Hansen’s disease is the official name of the disease, although the WHO and the United Nations in general tend to use the term leprosy.

Brazil is not considered to have “eliminated” the disease – a classification that is defined when the incidence is reduced to less than one case per 10,000 inhabitants, said Claudio Salgado, president of the Brazilian Hansenology Society.

The statistics distort the reality of a disease that remains hidden. The organisation points out that the number of cases dropped from 5.3 million in 1980 to 597,000 in 2001, to meet the WHO target of elimination by the year 2000.

Official data indicate that from 2003 to 2005 the number of cases fell 64.17 percent worldwide to 169,709, a result that is “impossible in epidemiology,” Salgado told IPS.

When a disease like hanseniasis is properly fought, its incidence falls steadily, but slowly and regularly, not abruptly, he noted.

What is hidden behind the figures, according to the expert, is shown by the case of Palmas, capital of the central Brazilian state of Tocantins, where an early diagnosis effort raised the incidence from 41.9 per 10,000 inhabitants to 219 per 10,000 between 2013 and 2016.

Participants at the First Latin American and Caribbean Meeting of Organisations of People Affected by Hansen's Disease, from seven countries in the region, as well as international organisations. This is the first time that regional activists have met to propose policies in defence of the dignity of those affected by leprosy. Credit: Mario Osava/IPS

Participants at the First Latin American and Caribbean Meeting of Organisations of People Affected by Hansen’s Disease, from seven countries in the region, as well as international organisations. This is the first time that regional activists have met to propose policies in defence of the dignity of those affected by leprosy. Credit: Mario Osava/IPS

This means, he argued, that when there is a clear decision to seriously address the disease, the numbers of people affected rise.

Another indicator from Brazil highlights an additional problem: there is 39 percent of “spontaneous demand” for treatment, which points to a lack of information and assistance. This is because spontaneous consultations occur in “advanced cases, with already apparent effects,” which are difficult to overcome, and sometimes incapacitating, Salgado said.

“The goal of elimination in 2000 had a positive effect of spurring initiatives and stimulating information and assistance. But declaring that it had been achieved led to an abandonment of commitments and actions,” said Salgado, a professor at the Federal University of Pará, in the northern Amazon region of Brazil.

“With that we are even losing knowledge, with reduced research in universities and reduced services. Compounded by the stigma of hanseniasis, a vicious circle is created and the tendency is for the incidence of the disease to grow again,” he concluded.

“There is a lack of research,” even to explain why the disease affects so many people in Brazil and why the prevalence drops when you cross the border, said Jorge Dominguez Sobrino, of Peru’s Health Ministry, which is working to fight leprosy in the province of Alto Amazonas, on the border with Ecuador.

“Perhaps genetic differences are a cause,” he told IPS.

In Peru the number of new cases points to “elimination,” but there is high prevalence in some provinces, especially in small towns. “There is a high hidden prevalence,” Dominguez Sobrino acknowledged.

Norah Salcedo of Bolivia (R) and Silvia Uieacu of Peru, who took part in the first meeting of people affected by Hansen's disease or leprosy, complained about the poor care in their countries for people who have the disease. Credit: Mario Osava/IPS

Norah Salcedo of Bolivia (R) and Silvia Uieacu of Peru, who took part in the first meeting of people affected by Hansen’s disease or leprosy, complained about the poor care in their countries for people who have the disease. Credit: Mario Osava/IPS

Early diagnosis is the primary right in relation to leprosy, agreed Salgado and Custodio. It will be necessary to revise and change some of the bases of the strategies to actually eliminate the disease, while some speak of “eradication”, with the reduction of new cases to zero.

One concern of the specialists is the identification of many cases in children, indicating contagion through undiagnosed family members or other people close to them.

A contradiction in the official data is precisely that many countries where “elimination” of leprosy has been declared, with a rate of less than one case per 10,000 inhabitants, have a worrying number of affected children.

In addition, where the prevalence is lower, such as in southern Brazil and other Latin American countries, the damage to affected persons is more serious due to late diagnosis, when effects such as loss of peripheral nerves, fingers or entire limbs are already irreversible.

Leprosy, a disease that has been present since time immemorial, is infectious and chronic, caused by the Mycobacterium leprae bacterium, as defined by the WHO, which specifies that it mainly affects the skin, peripheral nerves, the mucosa of the upper respiratory tract, the eyes and other structures.

Norah Salcedo, from the city of Santa Cruz de la Sierra, Bolivia, suffered irreversible damage to limbs and needs crutches. “There is no adequate treatment in my country, the sick continue to decline, without assistance,” she complained to IPS.

Bolivia is a country that “eliminated” leprosy, according to official data. Salcedo, as well as Silvia Uieacu of Peru, acknowledged that there is a great lack of knowledge about the disease.

Seven Latin American countries are represented at this first Regional Meeting, which brings together health officials and representatives of international entities, such as the Pan-American Health Organisation, and institutions from Japan – especially the Nippon Foundation – Germany and the United States.

Brazil also attracts international attention for compensating the victims of the segregation system in the so-called leprosariums where the sick were isolated. This practice was maintained by law in the country until 1986, although the possibility of a cure had been known since 1941 and it was clear that with treatment, the people affected by the disease were no longer contagious.

Since 2007, the Brazilian state has been compensating people who were isolated, but now the Morhan organisation is seeking to extend reparation to children who were separated from their parents. It is estimated that around 16,000 children suffered this forced separation.

These policies are of interest to similar movements in other Latin American countries, participants explained during the first day’s debates.

Many of the people segregated in these “colonies” continue to live in them, even after they were no longer isolated, because they have no chance of returning to their places of origin or rebuilding their lives, activists say.

 

Q&A: Important to Treat Anyone Suffering from Leprosy as an Equal Individual

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Alice Cruz is the United Nations Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members, says divorce on the grounds of leprosy, allowed by laws or not, is a prevailing reality. Credit: U.N. Photo / Jean-Marc Ferré

MANILA, Mar 5 2019 (IPS) – Discrimination against women who are affected by leprosy or Hansen’s Disease is a harsh reality, says Alice Cruz is the United Nations Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members.

“Divorce on the grounds of leprosy, allowed by laws or not, is a prevailing reality. In settings where women are not economically independent, it can lead to the feminisation of poverty, throwing too many women affected by leprosy into begging or even prostituting,” says Cruz, who was speaking via audio link at Regional Assembly of Organisations of People Affected by Leprosy in Asia that was held in Manila, Philippines. The Sasakawa Memorial  Health Foundation/the Nippon Foundation (TNF) which supports leprosy projects across the world sponsored the meeting.

A professor at the Law School of University Andina Simon Boliver in Ecuador, Cruz has extensive knowledge of the social stigma and discrimination faced by the people who are affected by leprosy which also amount to the violation of their human rights.

In an interview to IPS, Cruz speaks of the layers and levels of stigma that men, women and children of leprosy-affected people face and how the U.N. has been trying to end it. Finally, she lists the simple ways that every ordinary person can contribute to end the stigma that people living with leprosy face and how to help them become integral to society. Excerpts of the interview follow:

Inter Press Service (IPS): What is the link between human rights violation and the leprosy-affected people? 

Alice Cruz (AC): Throughout history leprosy has become much more than a disease: it became a label, mainly used to exclude. Leprosy came to embody what was socially prescribed as shameful and disrupting. It became a symbol, a powerful metaphor, for everything that should be kept apart, whether it was attributed to punishment for sinful conduct, unregulated behaviour, past offences and socially constructed ideas of racial inferiority, among others harmful myths and stereotypes, which led to massive human rights violations of persons affected by leprosy, but also their family members.

IPS: Can you describe some of the ways the rights of leprosy affected people are violated?

AC: Women, men and children affected by leprosy were, and continue to be in many contexts, denied not only their dignity, but also an acknowledgement of their humanity. It is not a coincidence that it is commonly said that persons affected by leprosy experience a civil death.

They have been consistently subjected to: stigmatising language; segregation; separation from their families and within the household; separation from their children; denial of care; denial of the means of subsistence; denial of a place to live; denial of education; denial of the right to own property; impediments to marry; impediments to have children; restrictions on their freedom of movement; denial of their right to participate in community, public and political life; physical and psychological abuse and violence; compulsory internment; forced sterilisation; institutionalised silencing and invisibility.
There are still more than 50 countries in the world with discriminatory laws against persons affected by leprosy in force.

IPS: What is the UN doing to prevent and end these violations?

AC: In 2010, the General Assembly, in a landmark move, adopted resolution 65/215 and took note of the principles and guidelines on the elimination of discrimination against persons affected by leprosy and their family members. In so doing, it established leprosy as a human rights issue and stressed that persons affected by leprosy and their family members should be treated as individuals with dignity and entitled to all human rights and fundamental freedoms under customary international law, the relevant conventions and national constitutions and laws. In June 2017, the Council adopted resolution 35/9, establishing the mandate of the Special Rapporteur on the elimination of discrimination against persons affected by leprosy and their family members. It called on States and all relevant stakeholders to cooperate with the Special Rapporteur in the discharge of the mandate. I assumed this role on Nov. 1, 2017.

IPS: How far have we come in achieving the 2020 target leprosy eradication?

AC: I am afraid we are very far from such a scenario. By the one hand, eradication of leprosy is not on the horizon given the lack of a vaccine. By the other hand, official reports of around 150 countries to the [World Health Organisation] WHO in 2016 registered more than new 210 000 cases of leprosy, with high incidence among children, which means ongoing transmission.

IPS: How can every ordinary person contribute to eradication of leprosy and ending stigma towards leprosy affected people? 

AC: Acknowledging that persons affected by leprosy are the same as everyone else and fighting harmful stereotypes in daily life. Remembering that anyone, including you and me, can come to suffer from any disease or disability and that diversity and dignity in diversity is what makes us humans.

 

New Regional Secretariat to Advance Leprosy Advocacy in Asia

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Culion Sanitarium and General Hospital Medical Director Dr. Arturo Cunanan urged delegates to the Regional Assembly of Organisations of People Affected by Leprosy in Asia to “put our partnership beyond these walls” and act on the strategies discussed at the three-day conference. Credit: Ben Kritz/IPS

MANILA, Mar 5 2019 (IPS) – Organisations of people affected by leprosy in Asia have agreed to form a regional-level secretariat to support national advocacies and represent their collective agenda at a world conference to be held later this year.

This was the most significant development to emerge from the Regional Assembly of Organisations of People Affected by Leprosy in Asia held in Manila from Mar. 3 to 5. The Coalition of Leprosy Advocates of the Philippines (CLAP) was selected by the delegates to serve as the first regional secretariat.

Sasakawa Memorial Health Foundation (SMHF) Executive Director Dr. Takahiro Nanri requested that the first major initiative of the secretariat be the formulation by June of a “road map” encompassing the Assembly’s consensus agenda, which would then be used by the SMHF and it’s parent body the Nippon Foundation (TNF) to help develop the programme for the world leprosy conference to be held in September.

SMHF and TNF convened the regional assembly in partnership with CLAP and the Culion Sanitarium and General Hospital (CSGH).

From theory to practise

CSGH chief Dr. Arturo C. Cunanan told the delegates assembled for the final day of the conference that, “putting our partnerships beyond these walls, putting it into action, is the big challenge” faced by the national organisations, who represented the Philippines, Indonesia, Nepal, China, and Kiribati.

Cunanan, who is considered the Philippines’ foremost leprosy expert, was particularly upbeat about the conference’s focus on improving communications to stakeholders.

“One of the most valuable things to come out of this conference is the learning about social marketing, and what interventions we can use,” Cunanan stressed to the attendees.

Another key takeaway from the conference, Cunanan said, was the recognition of economic opportunity as a vital component of social inclusion strategies for people affected by leprosy.

“I think an important thing that has emerged here is the idea that poverty is really the root of stigmatisation and prejudice,” Cunanan told IPS. “When people have financial resources, the discrimination goes away. Obviously, providing economic opportunity should be a priority for the various national organisations.”

Cunanan pointed out that priority complemented the focus on organisational sustainability, which was an emergent theme at the conference. “It is very similar to the same thinking that organisations need to find income-generating programmes to be sustainable,” Cunanan said. Reiterating the point he made to the assembly, he added that the goal for the organisations should be to put “theory into practise” and develop practical actions from what they learned.

Representatives of participating organisations discussed various national and regional objectives for leprosy advocacy in Asia. A significant outcome of the conference was the formation of a regional secretariat to coordinate and represent the Asian agenda at an upcoming world leprosy congress. Credit: Ben Kritz/IPS

Clear consensus

Starting with an overall theme of “improving social inclusion,” the Regional Assembly of Organisations of People Affected by Leprosy in Asia at the outset identified four areas for discussion: Preserving the history of leprosy and its treatment; defending human rights and eliminating the stigma associated with leprosy; improving the delivery of public health services; and sustainability of the organisations.

The consensus among the participating organisations was that sustainability was indeed a critical priority, and perhaps the most significant challenge faced by leprosy advocacies at the national level.

Another key national-level agenda item agreed by the conference attendees was the need to improve networking with their respective governments, as well as other key organisations. In line with this, developing strategies to improve organisations’ public image, branding, and their marketing efforts was also acknowledged as an important objective for national organisations. During the conference, the importance of understanding and developing effective social marketing was stressed, both through the use of social media and more conventional practises.

The development of a regional secretariat was considered the most important objective at a collective level. The conference participants echoed the sentiments of CSGH’s Cunanan that the shared ideas developed over the three days of talks should not be allowed to “dissolve” when the organisations return to their home countries.

Conference attendees also agreed that creating a “sustainable development strategy” on a regional basis should be prioritised going forward, taking into account the need to strengthen national organisations as well as the regional group. Just what that strategy would entail, however, is still subject to discussion among the various groups. 

Capacity building, improving the organisational and managerial capabilities of national organisations, also emerged as a regional agenda. During the conference, capacity building was expressed as a significant concern for many organisations, since many of their members lack relevant work experience or education. A regional strategy could help pool talent resources among the Asian organisations, at least until some of their own people could gain more experience.

The development of a regional framework and individual national agendas made the first Regional Assembly of Organisations of People Affected by Leprosy in Asia a success, conference facilitator Joseph “Boyet” Ongkiko told IPS.

“What excites me is to see the coming together of different groups, and their coming away with unity of heart and purpose,” Ongkiko said. “With leprosy, there is a commonality in the stories, but what we saw and heard are people moving from victims to victors.”

Nanri told IPS that much still needs to be done.

“There’s a big difference between elimination and eradication. As of today, most countries have eliminated leprosy, but it has not been eradicated yet as new cases continue to appear. To eradicate, what we need is one last big push – or re-activate public attention to leprosy,” he said, adding that until now the information around leprosy has not been well presented.

“If we can better package it, forge better partnership with media and if we can get greater political commitment, we can make that reactivation of people’s attention can happen.”

*Additional reporting by Stella Paul in Manila